Can someone help me

B

BleedOrange1968

New member
I am F508 and other one is 3272-26A>G. Can someone find info about this seems like oddball genotype? I can't find much at all about it. I have done pretty well w my cf thx to God! My pft's started falling in dec and I was working out 4 times a week. Was stressed out when moved in w my mom. Pft's kept falling so Vandy docs put picc in dec 31 came back n thy were down even more but I didn't feel bad n could get an app w doc!! Tht made me mad! I started getting sick bout week later n had to be put on oxygen for first time ever! Pft's kept falling so put another picc in n thy still fell. So at this point I had to do sommin I had started out 50 fev1 lowest it got was 29 or 30 sommin. Had my first bronc n tht sent me into orbit. I went into Vandy er on feb 11 n got admitted into intens care. Thy had said I had pneumonia and tht I may not be able to get back what I lost but I'm gonna try w God helping me! Thy said I was growing mrsa pseudomonas stentropomonas n candida. I feel like Vandy docs let me go to long. Doc asked me if I wanted to be eval by lung transplant team n I said yeah. Boy thy sure run u though the tests n don't hold back in telling u the hard truth. Like their scaring u into getting one. I passes all the tests and had the artiogram to check my lungs. My dad had a heart attack at 42. Heart disease runs in my family so I was worried tht I could have a blockage n not pass the eval. I was a praying n praying to God(I am a Christian) All of the sudden I hear this small voice sayin 'everything's gonna be alright, your gonna be ok' .... Tears of joy started rolling! The doc said he wished his heart looked as good as mine! I praised God n thanked him over n over. I got put on the transplant list feb 17. I had never been faced w anything like this but I thank for God all the time! The thing about it is I started getting better w less use of oxygen and doc asked me on feb 21 if I wanted to be deactivated and said yes! God took me off the list! I got out of hospital on feb 27. I am on vanc merrim 2 ds bactrim 3 times a day 1500mg cipro a day and coly. I guess I got off topic but just wanted everyone to hear my story. I am sched for pulmonary rehab this wed. Wonder what they'll do? Oh and I also am a PE teacher at a K-5 school. Gonna try n get back in April if Lord's willing.

Plz respond n tell me what u think n any advice I pray for all of us Cfers every time it comes to mind. Love u all but God loves us more!

44yrs old got diag 24 Email is collinsd1968@gmail.com will give phone no to anyone who wants to talk bout cf or whatever. Thanks
 
B

BleedOrange1968

New member
I am F508 and other one is 3272-26A>G. Can someone find info about this seems like oddball genotype? I can't find much at all about it. I have done pretty well w my cf thx to God! My pft's started falling in dec and I was working out 4 times a week. Was stressed out when moved in w my mom. Pft's kept falling so Vandy docs put picc in dec 31 came back n thy were down even more but I didn't feel bad n could get an app w doc!! Tht made me mad! I started getting sick bout week later n had to be put on oxygen for first time ever! Pft's kept falling so put another picc in n thy still fell. So at this point I had to do sommin I had started out 50 fev1 lowest it got was 29 or 30 sommin. Had my first bronc n tht sent me into orbit. I went into Vandy er on feb 11 n got admitted into intens care. Thy had said I had pneumonia and tht I may not be able to get back what I lost but I'm gonna try w God helping me! Thy said I was growing mrsa pseudomonas stentropomonas n candida. I feel like Vandy docs let me go to long. Doc asked me if I wanted to be eval by lung transplant team n I said yeah. Boy thy sure run u though the tests n don't hold back in telling u the hard truth. Like their scaring u into getting one. I passes all the tests and had the artiogram to check my lungs. My dad had a heart attack at 42. Heart disease runs in my family so I was worried tht I could have a blockage n not pass the eval. I was a praying n praying to God(I am a Christian) All of the sudden I hear this small voice sayin 'everything's gonna be alright, your gonna be ok' .... Tears of joy started rolling! The doc said he wished his heart looked as good as mine! I praised God n thanked him over n over. I got put on the transplant list feb 17. I had never been faced w anything like this but I thank for God all the time! The thing about it is I started getting better w less use of oxygen and doc asked me on feb 21 if I wanted to be deactivated and said yes! God took me off the list! I got out of hospital on feb 27. I am on vanc merrim 2 ds bactrim 3 times a day 1500mg cipro a day and coly. I guess I got off topic but just wanted everyone to hear my story. I am sched for pulmonary rehab this wed. Wonder what they'll do? Oh and I also am a PE teacher at a K-5 school. Gonna try n get back in April if Lord's willing.

Plz respond n tell me what u think n any advice I pray for all of us Cfers every time it comes to mind. Love u all but God loves us more!

44yrs old got diag 24 Email is collinsd1968@gmail.com will give phone no to anyone who wants to talk bout cf or whatever. Thanks
 
J

JustDucky

New member
I don't have any info on that second mutation, but I just wanted to say I am glad things are looking up for you. It just goes to show how strong CF'ers are when determination and faith rages within. It is good that you had all of the pre transplant testing done, if you decline again, at least that will be out of the way. Pulmonary rehab is a good way to get even stronger. I have been through such a program 3 times over the years, usually after a huge decline or long hospitalization to try and regain what I lost. You will learn how to breathe more effectively during exercise as well as learn how to pace yourself and when to push yourself. Over time, you will find that your stamina and strength will increase as well as your PFT's (hopefully)..
Keep at it and hold on to that faith!
Jenn 40 w/CF
 
J

JustDucky

New member
I don't have any info on that second mutation, but I just wanted to say I am glad things are looking up for you. It just goes to show how strong CF'ers are when determination and faith rages within. It is good that you had all of the pre transplant testing done, if you decline again, at least that will be out of the way. Pulmonary rehab is a good way to get even stronger. I have been through such a program 3 times over the years, usually after a huge decline or long hospitalization to try and regain what I lost. You will learn how to breathe more effectively during exercise as well as learn how to pace yourself and when to push yourself. Over time, you will find that your stamina and strength will increase as well as your PFT's (hopefully)..
Keep at it and hold on to that faith!
Jenn 40 w/CF
 
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